I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu

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Friday, October 9, 2015

Debate Over Autism Speaks

Amy Sequenzia, a non-verbal autistic, points out that she might be considered the “poster child” for Autism Speaks’ idea that life with autism is tragic, but that she’s doing just fine. She said that if Autism Speaks wants unity, they must move away from so-called “fixing” therapies and ensure that “autistics [are] part of every conversation about what affects our lives.”

Magro is a motivational speaker, author and the social media coordinator for Autism Speaks. He has autism. He got involved with Autism Speaks through awareness walks in college, received an internship from them and eventually accepted a fulltime job offer. He would be delighted to see a person with autism on the board, but is unstinting with his praise. “Everything I've seen with Autism Speaks,” he said, “is a lot of embracing individuals with autism.”

Then I asked Magro about whether he needed to be cured. His response revealed a pathway forward:

For a long time, when I was a kid, when I was having speech difficulties, when I was having trouble making friends, when I was having a lot of communication delays, I always wanted supports to help me progress. Autism Speaks’ mission is to help in the lives of people who have autism. Cure — in the way I’ve always seen it — is just being able to give supports to people [so that they] can live the best lives possible whether it be physical, occupational, speech therapy, etc. I hope that we are able to put supports in place to help our kids progress.

Notice how Magro isn’t arguing against Autism Speaks’ mission, but he also isn’t using the language of epidemic. If Autism Speaks isn’t going to listen to its critics, maybe it could learn to listen to its own employees.